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Never Tested....and Wish I Had

Wakingup

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Wakingup Apprentice
Wakingup
Posted

This is for anyone trying to decide whether to test. I'm 67 years old and realised almost two years ago that I have gluten intolerance. I stopped eating gluten and get terribly ill when I ingest any. I would like to know for sure the extent of my intolerance. Would I have to go back to eating gluten every day for awhile?

I don't know if I could handle that and not knowing for sure really messes with my mind. Because when I feel fine, I get careless and eat out like I did last night and then suffer terribly. I am a mess today. I'm in italy......it's the middle of the night here.....can't sleep.....stomach feels like it's about to explode, I'm weepy, miserable, anxious and deeply depressed. I think if I were tested, I'd take better care of myself.......I guess part of my reluctance is fear that even testing might yield a false negative? I have severe brain fog right now so hope I am making sense. Please can someone enlighten me?

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124chicksinger Apprentice
124chicksinger
Posted

I guess part of my reluctance is fear that even testing might yield a false negative? I have severe brain fog right now so hope I am making sense. Please can someone enlighten me?

 

After putting 2+2 together and getting 4, I thought I had celiac disease after having symptoms that started about 3 years ago.  I am no expert, and I tested negative both blood and scoping for celiac just 10 days ago. However, I decided, like you, to eliminate gluten anyhow.  I have a negative diagnosis, but I am testing myself with eliminating gluten and seeing if my symptoms will subside.  I have underlying possibly related conditions as well as celiac symptoms.  It isn't that I disagree with the non-celiac diagnosis, but it is perhaps that I do have a sensitivity to gluten and the only way to know is to eliminate it and see.

 

You already know how gluten affects you.  It isn't to say that if you had a diagnosis of celiac that you would behave with a stricter diet; maybe you would, maybe not.  That you eat gluten and react says everything, wouldn't you agree?

 

To get a diagnosis you would have to eat gluten for some time, quite a bit of it daily.  Do you want to put yourself through that to discover something that you already know?  

 

I'm am sure there are others here who can give you more sage advice than I, but I think you answered your own doubts with a resounding "don't eat the gluten."

GottaSki Mentor
GottaSki
Posted

Welcome Waking....that can't sleep ;)

 

The severe reaction you are experiencing would not happen unless you have either Celiac Disease or Non-Celiac Gluten Sensitivy -- either have the same treatment -- complete removal of all gluten -- even cross contamination while cooking (ie restaurants with gluten-free menus that cook those gluten-free items in common areas with gluten items).

 

The choice really is yours.  To have accurate testing -- you'll need to consume the equivilent of one slice of glutenous bread each day for twelve weeks (blood tests) or two weeks (endoscopic biopsy).

 

If you have children or you don't think you can remain completely gluten-free without official celiac diagnosis the decision may be to complete a challenge.  

 

I wish the decision was simple - it is not.

 

Let us know if you have more questions...be sure to drink lots of water and rest during times that you accidentally ingest gluten.

GottaSki Mentor
GottaSki
Posted

just an added thought -- perhaps genetic testing would be enough to help you stay the course?

NoGlutenCooties Contributor
NoGlutenCooties
Posted

I stopped eating gluten and get terribly ill when I ingest any.

 

If you stopped eating gluten and now get sick when you eat it then you have your diagnosis.  All that is unknown is whether you have Celiac or non-Celiac gluten intolerance.  But if it's NCGI, this is the only test for it anyhow (that I know of).  By eating gluten you are literally killing yourself from the inside out.

BlessedMommy Rising Star
BlessedMommy
Posted

I understand your situation! What I would say, is if you ever do try to do a challenge, be sure to have doctor supervision. 

 

I wound up in the hospital 10 days into my gluten challenge with neurological complications from severe headaches. We decided that that was my answer and I went gluten-free for good. 

Wakingup Apprentice
Wakingup
Posted
  • Author

just an added thought -- perhaps genetic testing would be enough to help you stay the course?

What does this entail? Do you know if this is covered by insurance? Is it expensive?

Can it confirm celiac disease?

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GottaSki Mentor
GottaSki
Posted

What does this entail? Do you know if this is covered by insurance? Is it expensive?

Can it confirm celiac disease?

 

No it can't confirm Celiac Disease because about 30% of population have the genes associated with Celiac, while only an estimated 1% have celiac trigger.

 

What it can do is add another piece to the diagnostic puzzle - especially when a person removes gluten, has symptoms improve and is unable to tolerate gluten for the required challenge necessary to attempt diagnosis.

 

My celilac doctor ordered mine because my kids blood work was negative -- yet they had symptom resolution so we wanted to add another piece to our family's puzzle.  For us it was worthwhile.

 

It is a simple blood test and my insurance did cover it -- that was five years ago.

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